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Disability Day of Mourning 2015

It’s almost midnight on the east coast, and today was the Disability Day of Mourning for 2015.  This event began several years ago after the murder of George Hodgins, when a group of disabled activists, several of whom I call friends, realized that the media and the world spent more time sympathizing with the people who killed him than with the victim of said murder.  The newspapers and other media reported his murder with the information that he was autistic, and at least one “autism advocacy” organization completely omitted his name (a point they rectified later with an apology).

I wish I had the chance to know them.  I wish that they could have grown up, grown older, had engaged with the world in the way they would have felt comfortable with, and been offered the supports that they needed. Not what their parents needed, but what they needed.

There are so many good parents out there that as a parent, I’m sure it seems unfair to you for autistic and otherwise disabled people to focus on these tragedies as signs of a bigger problem, one that involves parents and caretakers specifically.   It would be one thing if these parents were always condemned by the media and the culture in which we live, but unfortunately, that is not the case.  I have been made aware of cases like this for years now and every time, I find comment after comment after comment saying that I need to put myself in the parent’s shoes because they were overwhelmed or mentally ill or any number of things.  Well I am Autistic and I am mentally ill and I am hard of hearing and I am a parent to two wonderful Autistic children and I have plenty of stress in my life, some even caused by autistic-related things itself (a phenomenon I call “your autism is poking my autism”) that has specifically to do with being an autistic parent of autistic children, but amazingly, I still don’t understand the vantage point of murdering your children because you are stressed out.

I could make so many comparisons with murders of children that have been covered extensively by the media.  I’m from Florida, and I cannot forget the way that the media portrayed Casey Anthony.  I cannot forget the way that the entire community talked about what a horrible person she was, and how she deserved to burn for her daughter’s death.  I wonder if they would feel the same way if Caylee had been autistic. I suspect no.

I have read story after story where the children were neurotypical and/or abled, and whose mothers were not defended when they went missing or were murdered.  The stories of Susan Smith and Andrea Yates stick out in my mind, though I do know that there are more out there.  I remember there being a small bit of sympathy for Yates because of the implication that her husband withheld psychiatric care from her. Even still, the majority of media reports and comments on said reports were inflammatory and said things like “she deserves to rot”.

The fact of the matter is this – autistic lives are devalued in society. We have whole organizations devoted to telling the world what a horrible thing it is to have someone like us in their lives.  We have campaigns where we light things up blue, but we don’t for one second think of what supports need to exist.  We don’t consider that autism lasts more than 18 years and that every autistic person needs support, regardless of age.  We have these false allies, who think that they’re doing good by spreading “awareness” but who don’t actually consider our voices or what we need.  They give themselves pats on the back but then turn around and say that we need to listen to both sides of the story when people like us are murdered.

The problem is that the dead can’t speak.  We can do our best and advocate for ourselves and for people like us so these sorts of murders don’t happen again, but the people who very much need to give their side of the story are already gone.  It’s too late for them.

So what do we do? We mourn the loss of our disabled siblings, which is what I’ve done today.  I was not personally able to attend a vigil, but I read off their names.  I read more about each of them, at least what was available.  I mourned the loss of the people they were, the potential that was cut short for a variety of reasons, but all boiling down to the devaluation of disabled lives.

And tomorrow I will look to the future.  I will do my part to fight the culture that says that these actions are okay, that wishes the death penalty on Casey Anthony but who doesn’t think that Dorothy Spourdalakis really deserves much punishment, if any at all.

 
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Posted by on March 2, 2015 in Uncategorized

 

An Open Letter to Benedict Cumberbatch

Dear Benedict Cumberbatch,

You don’t know me, and I don’t know you, but I feel like I need to say something in the wake of your devastating comments about autistic people. If you were a friend, I’d sit you down with a cup of coffee and explain to you bit by bit why the words you said about people like me cut so deep.

But I don’t know you, so this is the medium I must use.  I am a 33 year old queer autistic person who has two children who are also autistic.  I’ve been a fan of your acting since I watched my first episode of Sherlock three years ago, and my admiration of your work has grown from there.  As a person who has admired Alan Turing and has read several biographies about him, I was very excited as a person who identified with two different parts of his identity – as a gay person, and as an autistic person (the latter which has been debated, but is almost 100% agreed upon by scholars as well as people who knew him).

I know that you’ve fielded quite a lot of questions regarding the characters you play, which is a natural part of discussing upcoming films, TV series, etc.  I’ve seen that many reporters and interviewers have touched upon the question of whether you play your characters (some of whom are not just characters, but who are people who actually lived) as autistic. It’s a difficult question, I’m sure, especially as your interaction with autistic people (to the public’s knowledge) is limited to just a few interactions in your research for Danny Boyle’s Frankenstein.

I wish you would have said “I don’t know.”  I wish you would have embraced your ignorance of this topic, instead of discussing how “lazy” it is to interpret Alan Turing as autistic, despite there being loads of evidence that he was.

I personally was drawn to your interpretation of Sherlock in part because of Sherlock’s physicality, as well as his (sometimes present) social ignorance, and just the many ways that Sherlock reminds me of, well, me.  Not to mention that the word “Asperger’s” was uttered on screen in regards to him, whether you think that is canonical or not. I’ve written extensively on my feelings regarding Sherlock being autistic, which for me extends beyond your version of Sherlock Holmes, but also includes most other adaptations as well as the original stories.

I also saw a similar physicality at a much more basic level reflected in your interpretation of the Creature in Frankenstein.  I later learned of the ways in which you obtained that knowledge, which sickened me tremendously.

So to hear you deny the fact that many of your characters can absolutely be interpreted as autistic, to hear you call your fans “lazy”, many of whom are actually autistic ourselves, is hurtful. But perhaps you just don’t know that nearly 2% of the population is autistic, and therefore you probably encounter more autistic people than you realize.  Many of us have been subjected to abusive therapy called Applied Behavior Analysis in an attempt to make us appear as though we were not autistic.  Its origins lie in Dr. Ivar Lovaas, who also worked with the “feminine boys project” to attempt to eradicate homosexuality in young boys.

It’s hurtful to be called lazy or wrong.  But it’s devastating to hear the way you talked about a 17 year old who you assumed had the “mental age” of a one and a half year old infant, all because he didn’t fit into your ideal of what a 17 year old disabled teenager should be.  And it’s horrible to read that you think that all autistic people do is struggle all the time – that your idea of autism is so skewed that all you can see is suffering and struggle and not the achievements and pure joy that is being autistic.

Over the past few days, I’ve read that it’s been confirmed that you’ll be playing Dr. Strange, who is canonically a disabled person.  Now, I’ve seen you in Hawking and I think you did a fantastic job there.  I’ve seen your (probably unintentional) portrayals of several autistic or at least non-neurotypical characters.  I don’t doubt that you absolutely can do a great job.

But the way you talk about us is telling.  I spent almost a year hyped up about going to see The Imitation Game, only to be completely devastated three weeks before the premiere.  I have only a passing desire to see it now, even though I’d been looking forward to it for quite some time.  I had a similar experience two years ago when I read your comments regarding Frankenstein.  It’s a good thing that Sherlock has such a long hiatus between series.  It allowed me some time to process my emotions about the things you’d said about people like me.  I can tell you I was far less excited about Sherlock series 3 than I was about Sherlock series 2.

You spoke recently about The Imitation Game, and you said that it “celebrates outsiders; it celebrates anybody who’s ever felt different and ostracized and ever suffered prejudice”.  I felt so very happy when I read those words, thinking, “this is someone who understands the person who he’s playing”. It was just a day or two later that my hopes were dashed as you denied Turing’s neurodivergence, and I wondered if perhaps I was the wrong sort of “different” for you – is it okay if I’m queer, but I’m the wrong sort of different if I’m autistic? Is there something shameful about being autistic, because your manner of speaking about us seems to indicate that is so.

So please, open your eyes and start paying attention to what autistic and otherwise disabled people are saying about our own experiences.  Don’t listen to Autism Speaks, no matter what your Star Trek co-stars may say.  Educate yourself, and show that you actually do care about what autistic people have to say.

In the meantime, I’ll continue writing as much autistic Sherlock and autistic Martin Crieff fanfiction as possible in an attempt to soothe myself from the massive disappointment I feel because of your comments.
——————

Have some links.

Frankenstein stuff

Frankenstein stuff, two years later. (found on page 3 of the article)

Alan Turing autism questions

Denial of Sherlock being on the autism spectrum

Short mention of Dr. Strange and disability

Autism Speaks link 1

Autism Speaks link 2

 
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Posted by on December 12, 2014 in Uncategorized

 

Tags: , , , ,

Newsflash: That’s called educating!

Someone on another website posted the following statement:

if u try to fix & cure autistic ppl as part of being an ally you are not an ally you are the enemy and we will destroy you

 

I’m not going to argue the semantics of the statement, and I know that statements like this often devolve into accusations about what is meant by the phrase “destroy you”.  I tend to take a non-violent approach, and believe that it means “destroy the ideology behind this” rather than actually harming a person.

What I want to talk about today, though, is a response that someone wrote to this meme-like statement and the explanation that Autism isn’t something that needs to be cure.

actually, it does, to a certain degree. autism does not need to be eradicated, but it needs to be “helped” so that people can live a functional, productive life.

 

I sat back and read that and thought about the disparities between how people treat autistic (and to a lesser extent, other non-neurotypical) kids and how they treat neurotypical kids.  

Referring back to the last statement about how “[autism] needs to be helped so that people can live a functional, productive life”, I find myself baffled by the idea that this is anything other than education in one realm and parenting in another.  If your child is allistic or neurotypical, you’re going to teach them right from wrong, how to make friends, how to tie their shoelaces, and any number of other skills that are necessary for “functioning” in the real world.  But doing so for an autistic person means therapy and many NT people (like the anonymous person in the quote) is something entirely different and radical? 

It’s not.  It’s not difficult for me to look at these scenarios and realize that you’re basically doing the same thing.  You’re teaching an autistic person, and you’re teaching an allistic person.  Why do we continue to stigmatize something that should be an essential part of education and parenting just because the person involved is an autistic one? 

I know the reason.  It’s ableism.  It doesn’t make it right, and that’s one of the many things that needs to change.

I am a former English teacher. I  taught for a full year and a few months at different levels (6th-12th grade).  I loved it, but it wasn’t the right fit for me for various reasons (many of which were autism-related).  I say this to say that I know what educators do, the things that we teach beyond the subject matter.  I know that we often modify our lesson plans so that we can reach children who learn differently than the lecture-take notes form of learning (which doesn’t really work for a lot of students anyway).  I am very fond of individualized learning, and I know a lot of teachers are, too, because creating different ways of presenting lessons means more kids are interested.  Meeting kids at their level means that they’re more interested in what they have to say.  When they aren’t treated like they’re automatic failures because they don’t learn like everyone else does (or how they perceive everyone else does), they thrive.  I’ve taught disabled kids, I’ve taught immigrant kids who were learning English for the first time at age 12, I’ve taught gifted kids, I’ve taught your average bookworm kid, etc. etc. etc.  To me, I don’t see a whole heck of a lot of difference between teaching the bored gifted kid in the way they learn best, and the learning disabled/autistic/ADHD/etc kid in the way they know best.

To me, the only difference is that the IEPs made it easier to know where to start.  It gave me a starting point.  It’s a little different with parenting, because you don’t know where to start at first.  You see your kid’s strength and weaknesses, and as long as you’re ignoring the voices of those that will tell you that your kid is a tragedy (such as Autism Speaks or any other number of sources that make us out to be burdens), you’re going to try and meet your kid where they’re at.  

My eldest is struggling academically because of the poor choice to send her to a “top notch autism school” for a year and a half.  While they addressed teaching her life skills, they didn’t do very well on focusing on academics, something I failed to grasp at the time.  When she left that school and transferred to an exceptional local public school, she had some difficulties. I as a parent am not going to ignore that and just try and expect that she should be doing exactly the same things that her brother is. She lost a whole year and a half of education, and of course she’s going to need some time to catch up with her peers.   I’m going to meet her where she’s at, not where I expect she should be at.

It should be simple.  Educate your children, regardless of neurotype, in the way they learn best.  Prepare them for life as best as you can.  Teach them the skills that they need in order to survive.  Teach them that they aren’t failures if they don’t live up to their own expectations, or the expectations of their peers.  It’s okay to not be able to do something, and to ask for help. Being autistic and having low executive functioning skills does not mean that you’ve failed.  

 

 
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Posted by on August 27, 2014 in Uncategorized

 

Tone it down

Originally posted on love explosions:

By Beth Ryan

Tone Policing.  Please stop doing that.

tone focus Yellow background with a cartoon police officer holding his hand up. The text reads: I’m wrong. So let’s focus on your tone.

What is tone policing?
I’ve created some examples based on what I see people saying.  Often.  Too often.  Tone policing doesn’t just apply to Autism Speaks discussions.  But that’s what’s on my mind lately.

Example 1:
Person A:  Autism Speaks is a horrible organization which promotes the hatred of Autistic people.  Giving your money to them is funding a hate organization.  I am Autistic and you’re financing hatred of me.
Person B: I agree with you but people are just going to dismiss you as cranky and angry if you take that approach.  You need to gently educate people if you want them to listen to you.

Example 2:
Person A:  You shouldn’t support Autism Speaks because only 4%…

View original 929 more words

 
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Posted by on June 18, 2014 in Uncategorized

 

#MYWRITINGPROCESS BLOG HOP

#MyWritingProcess Blog Hop

Thank you, Lucas Scheelk, for inviting me to participate in this blog hop! I feel honored and a little overwhelmed in being included in such a fantastic group of Autistic writers/poets/etc.

On what project(s) are you working?

I’m still working on Acceptance, a BBC Sherlock fanfic featuring a demisexual and autistic Sherlock in a polyamorous relationship with John Watson and Mary Morstan.  The storyline diverges from BBC canon quite a bit, but I have an idea of where I’m going with it.

I have an untitled 100,000+ word story (that is the culmination of two years of doing NaNoWriMo) of post-Reichenbach Sherlock fanfiction.  I’m undertaking the tedious task of splitting it into different segments so it’s more a series of vignettes with a connecting theme than it is a novel-length fanfiction.  It’s an exploratory piece focusing on the female characters in Sherlock, giving them their own stories, much of which the original source text has failed to do (either in the original Arthur Conan Doyle stories or in the BBC programming).

I’m also working on an untitled collaboration project with one of my close friends, which features a genderqueer Sherlock.

I’m also involved in roleplaying within a couple of different universes, sort of based on BBC Sherlock canon, but definitely with divergent storylines.  In one of those roleplays, I play a 20 year old allistic but not neurotypical John Watson to my rp partner’s 17 year old autistic Sherlock.

I have some other fanfiction works in progress which are mostly in the planning stages for various fandoms, including Harry Potter, Cabin Pressure, Welcome to Night Vale, and The Chronicles of Narnia.

How does your work differ from others in the genre?

I don’t really know how to answer this question fully, because I think that every writer’s work is different, and unique to their voice.  I think maybe the way that I tend to focus on character’s emotional states and then try and reflect that in the physicality of the work is the biggest difference.  I don’t know if other authors work from the inside outwards like I do, but it seems like a big difference.

How does your writing process work?

I hear conversations in my head between characters.  It usually starts as a bit of dialogue, or maybe something like a gif or a photo or just a phrase will get stuck in my head and just evolve from there.  For longer fics, I tend to have something more planned out, and I tend to be able to see the bigger picture.  But even with longer fics, I may have an idea of what’s going to happen but I can’t just sit down and write.  I know that other people do, but as much as I want to be able to plan to write and write and write, if I don’t have some sort of inspiration, my writing is going to fall flat.  For example, I’ve been writing Acceptance since late December/early January, with the last update being in mid-January, and I’m just now completing chapter three and beginning to edit.  I knew where I was going with it, but I wasn’t quite sure how to get there until I had a sudden jolt of inspiration.  That’s how most of my writing has gone, really, and it might not work for everyone, but it works for me.  I also am lucky that I don’t have the pressure of this being my occupation.  It isn’t something I’m paid to do, so I don’t have time pressures or demands that soemthing be publisehd by a certain date.  I can afford the luxury of taking my time and figuring out how I want to explain a character’s emotional state by the circumstances surrounding them.

Next Monday (9th June)

My good friend Heather will be answering these questions! Look forward to her post then!

 
 

Not made for this world

I know that I’m not alone in the feeling that I don’t really belong in this world.  This is a somewhat “no duh” sort of statement – most autistic people, I imagine, feel that way at some time or another.  

I feel like so many times, I try so very hard, harder than my allistic/NT counterparts.  I expend so much energy, I work so hard and try and do so much just so that I can rejoice in little victories.  

I have done something recently that I don’t think I ever expected to do.  I’ve been promoted to manager of the fast food restaurant where I work.  This is fantastic and I’m so grateful that they’re recognizing how hard I work to make every guest’s experience a good one, and I don’t balk at hard work, and I’m always there to pick up any shifts that they need me to.  

The problem is that I’m extremely nervous about this change.  Not only am I going to be in a more fast-paced part of the store, but my responsibilities will be increased and I won’t always have a script to rely on.  Because let’s be real.  You screw up someone’s order at the drive thru, and you have a script to fix it.  Your interactions with a customer are very minimal and they pretty much rely on a formula.  Greet the customer, take their order, thank them.  Greet them when they get to your window, take their payment, thank them, and send them to the next window to retrieve their order.  Of course there’s some variance here, and some of them make little comments and jokes and I never know how to fully respond to those, but overall, it’s pretty much the same thing every day.

But now? Now I will have people to manage, and added responsibilities and what if I don’t understand something is a joke? And one of the management training e-learning courses mentioned that only 7% of what is communicated is through words only, and that body language/facial expressions/eye contact is important and this makes me want to cry in frustration.  Will I piss off someone and be reported as “rude” (which is grounds for immediate termination)? Do I dare bring up the fact that I’m autistic with my employer, which though it isn’t a secret (it’s in my employment paperwork from my new hire orientation) isn’t exactly something I have been completely open about at work?

I don’t know.  Will I be able to manage the politics within the management that currently exists? Will I be accepted as one of them or will I be an outcast like I usually am? I’m not sure.  I want to do well, because I love my job.  I know it’s against the stereotype of autistic people, but gosh, I really do love people.  I love making them happy.  I know that our food is not the best health-wise, but I want to make people happy by giving them at least good quality food, even if its healthfulness is in question.   

It’s mostly just nerves.  Of the three people becoming manager this month, I’ve been there for years less than the others.  So I know that I’ve shown that I can do my job and do it well, and they’ve taken notice.  I am further in my training (in the e-learning modules) than the others, as far as I can tell.  I am excited about this job, and I want to do well.  Some would say that it’s just nerves, but I know that isn’t the case.  I have legitimate concerns because of the way I am and the way I’ve been since the day I was born.  Perhaps if I had more social skills training taught by other autistics, I’d know how to properly form my face so it doesn’t look like I’m either overly enthusiastic and making fun of someone or completely flat and disinterested.  

I guess in the end, I’ll find out how autistic and disability friendly my employer really is.  

I’m grateful for the opportunity – I just hope that I have the chance to prove myself.

 
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Posted by on April 29, 2014 in Uncategorized

 

It’s World Autism Day again

Today is World Autism Day.  It seems like only yesterday that it was last year’s World Autism Day. And yet, here we are again.

This day is always difficult for me, because while on the one hand, I want to say “yes! Let’s focus on autism and how it affects us!”, I just can’t, because of who is behind this campaign. Autism Speaks is the primary organization behind autism awareness, especially in the United States.  I cannot condone their message of fear and dehumanization.  I cannot sit back and be passive.

When I see that blue puzzle piece, or one of those Autism Speaks arm bands/bracelets, something within me dies.  Something makes me feel ill and shaky, and I wish that I didn’t have such a visceral reaction to a symbol like this.  But this is my blog, and I’m an honest person, and yes, Ms. clothing store manager, every time you hand me your Autism Speaks Chase card, I have to curb my desire to just promo off your entire meal so that Autism Speaks doesn’t receive a cent.  

I was a naive person for a long time.  I believed that most people were good and didn’t wish to cause any harm. I still think in some ways that is true, but not meaning to do harm and actively working to not cause harm are two different things.  When a child is diagnosed with autism, one of the first resources that medical professionals usually hook parents up with is Autism Speaks.  So being clueless and not understanding the harm is really not something I’m going to be angry about.  However, if an autistic person (or ally) says “hey, Autism Speaks is bad because of these reasons” and you still insist that we have to do something to prove it, well, I know that I can’t count on you to be my ally, and you are certainly causing harm.

There are dozens of companies, celebrities, and even philanthropic associations that support Autism Speaks.  They mean well, but they consistently ignore autistic voices.  I had a rather enlightening interaction just today with Ed Asner, and it made me incredibly sad and frustrated that someone who has the ability to do so much good chooses instead to complain about autistic people making too much of a fuss about Autism Speaks.  Last year, I was accused of being a troll by William Shatner’s Twitter followers because I tweeted the same message to half a dozen celebrities, who were taking part in a very specific venture with Autism Speaks.  It’s nothing new, but it’s frustrating that it seems like people only care about supporting “autism awareness” when it doesn’t cost them anything.  I don’t mean financially.  I mean, “hey, look, I did a good thing – I support Autism, so there’s my good deed for the day and my pat on the back.”  

I want real support. I don’t want this feel good “support” that does nothing to help me, my kids, or anyone else who shares my diagnosis.  What good does it do to be aware that autism exists? Most people are aware, but many people still call autistic kids brats, don’t understand what autism actually entails, and even parents of autistic kids still attribute things that are not autism to autism (like seizures, gastrointestinal issues, etc.).  

So for World Autism Day, what I’d really like is acceptance and understanding.  I want people to understand that I am a person, I am an autistic person, and no, I don’t need that part of me erased.  I don’t need a cure, and autism didn’t kidnap the allistic child that I would have been.  I didn’t destroy my parents’ marriage.  I didn’t ruin my family’s lives.  

 
9 Comments

Posted by on April 3, 2014 in Uncategorized

 
 
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